Reaching out.

Hi there. 

I don't even know how to say what sort of cancer my mother has. It started when she had a hysterectomy and they found a 15cm stromal sarcoma on her uterus. We hoped it was all gone, but the PET scan showed 2 patches. She had 3 rounds of chemo and they shrunk a little, so a surgeon went in to look at whether he could cut them out. 

We found out the next day - my mother's birthday - that there's this network of cancerous webbing along her abdominal wall. It's flat, so didn't show on the scan (?) and the two patches are part of it. We don't know if it's the original sarcoma or something else, but there's too much of it to take out. The surgeon said it's slow-growing, but the sarcoma was high grade and grew quickly so I don't know if I believe him. 

I live with my mother. She's my best friend. I have a 10-year-old son on the Autism spectrum and I don't have a big network of friends or family close by. I'm the one looking after her. She doesn't want to talk to anyone like a counselor, etc. 

I'm so frightened. Not just of losing her, but what life looks like after that. Who will I talk to every day? Who will help me with my son if I'm sick, or at Uni? (I'm studying full time) Where will we live? I couldn't afford the rent here on my own. 

So many questions and I feel like the ones giving me the most anxiety, I can't raise with her. All her energy is being spent on just being okay with this outcome herself. 

We go back on Wednesday to find out what the biopsy of this webbing says about the cancer and it's behaviour, and then Thursday we speak to her oncologist about what her treatment options are. Maybe I'll feel better if we find out it's slow and won't take her for a while, but honestly, I just want it all to go back to how it was before she had her original surgery. I thought we'd have years and years left. We had so many plans for after I graduated. 

We live in a small town, about 5 hours from the largest city. She's there, now, staying with my cousin while she recovers, and I had to come home so my son could go to school. Without her here, it's easy to pretend she's already gone and to feel how lonely and empty life will be. 

How has everyone coped with this? How do you get through it? 

Thank you for listening. 

  • Hi Evie I am so sorry to hear about your mum. I understand what you are going through and how frightening all of this is for you. My own mother was diagnosed with 2 different cancers in October 2016 and she died 3 months later. She never got the chance to have any treatment at all. There was talk of chemo and surgery and radiotherapy but events escalated and there was nothing we could do to put the brakes on. I had envisaged a difficult year of treatments and then a 6 month recovery period and my mother being well and enjoying her life again as before. All I can say to you is try not to think of all these worries that you mention, try not to think of how you might cope without her, try not to think about how you would pay rent. It does no good to dwell on these things. You will make yourself sick with worry. Take one day at a time. Today is today and tomorrow will come tomorrow. Today you just deal with today. Do all that you must do as a mother to your son and while he is at school attend to your studies and be a daughter to your mother. Better that you do not trouble her with your worries as she has enough of her own. Try to be strong and above all stay positive. Do not allow negative thoughts to creep into your mind. I was determined to always stay upbeat and positive with my mum. Morale is a huge factor with anybody who is ill. Keeping their spirits up and their mindset positive has a proven physiological benefit as well as psychological. If you crumble then she will. If ever I felt overwhelmed or tearful when I was with my mum I went off the ward and had a private cry in the corridor and returned to her when I was back in control of myself. My mum really had no idea how ill she was. I am sure she would have completely given up if she had known. I am nobody to give you advice but I do know that every single day that you have with your mum is a blessing and generally speaking people do not even realise what the highs are until they reach the lows. There are good days and bad days. Sometimes more good than bad and sometimes many more bad than good. You will get through this. Look after your son and your mum to the best of your ability and importantly take care of yourself as well. Because, without you, the whole house of cards collapses. So take time for yourself, be with friends and family and unload to them, try to eat well and try to get regular exercise and rest. It is emotionally draining to be a carer and to also be a parent to a young child. It stressed me out. I had a lot of late night baths which relaxed me and helped me to sleep when my anxiety was right off the chart. Information is king here so Wednesday and Thursday will change the landscape for you this week. Think positive. Ask questions at these meetings and take notes. It's hard to take everything in when you are so emotionally involved. You can be overwhelmed at these appointments and find that you were in the room but you did not properly listen. So I found that if I wrote down my questions in advance of the meeting and then wrote down the key points that the doctors made then afterwards I could refer to it and know that I had not missed anything. Some appointments I even recorded the audio on my mobile. My whole heart goes out to you & your son and your mum at this time. Dig deep now and be strong and stay positive about this. I hope that something or other that I have said will help. You do right to reach out to people. You need support right now and I know this is an awful situation where your best friend is your mum and you cannot lean on her now. Your roles are reversed for now and she is leaning on you. You can do this. You probably think that you can't cope with this but you can. Already you are coping. Take care of yourself. Danielle
  • Hi there ... you are going through one of the hardest times of your life as if your blessed with a good mum who is also your best friend ... life doesn't get much tougher then that

    I lost my mum and soul mate 27 years ago ... she was my two sons best friend too .. I could never picture my life without her in it ... I was always with her .. holidays ... Xmas ... days out ... and she looked after my 7 year old while I worked ... 

    when she went suddenly at 69 I thought I'd fall apart and never stop crying ... but I felt like she was there behind me as I was told the news and she was saying it's o.k I'm right here ... and the saying "miss me but let me go" came to mind ... I held my son that night and told him nanny was in heaven and she didn't need her walking stick or all those tablets she was on .. and she would never be in pain again ... we hugged and cried together and then he went to watch his programme .. children are amazing .. much better at coping then us adults ... 

    i imagine she is in the room and know her heart would break to see us suffer so ... so in her memorie I tried to make her proud and yes I did manage to go on ... but I still look up and tell her all the news about what's happening and I took my grandkids to her spot so she could see how her grandsons, my sons babies  ... 

    yes I miss her every day ... but I hope you can pack in more 'l love you, hand holding, smiles and tears yet ... hold dear each moment you have and I so hope you'll find the strength to get through ..

    big hug .. take care of your heart   ️ Chrisie x

  • Thank you, Danielle. 

    I almost didn't come back to this website, but I'm so glad I did. I appreciate so much hearing about your experience and I am so sorry that you lost your mother so quickly after her initial diagnosis. 

    It's incredible how much better you feel when you hear someone else say "me, too". I also expected a few months of treatment followed by some radiation and then, of course, Mum would return to 'normal'. After all, we know other people who have had (different kinds) of cancer and done just that. But that's not our story and it has been very hard to come to terms with it.

    Thank you for all of your encouragement. We do have some more information now and it's not good news. The cancer is high grade, aggressive and anything they try isn't guaranteed to work. They're going to give her a new chemo protocol and see what it does if anything.  We start in a week and a half, to give her body a bit of time to heal from the surgery and then 3 rounds before a CT scan. If the cancer has visibly grown and the chemo hasn't worked, there is one more treatment they could try. If that fails, then there is nothing else they can offer her. So, at best, assuming there are no complications from the chemo, or the cancer does not grow so quickly it kills her before then, we have 6 months of hope left. 

    I am going to take your advice, and Chriss' advice, and just try to focus on Mum. I'm sure she will be concerned about my wellbeing and that of my son, and when we get to the point of no return, perhaps then is the best time to talk about preparing for the end, not right now. 

    Again, I deeply, deeply appreciate your words and your sharing. They have really made me feel so much less alone. And that's an incredibly valuable thing when you're in a situation that isolates you and makes you feel lonely. 

    Kindest regards, 

    Evie. 

  • Chriss, 

    Thank you so much for sharing. As someone who has been through what I am about to, I appreciate your words and your perspective more than you know.

    I cannot imagine a day without talking to her and I am sure that when faced with her absence, I will continue to have those conversations with her, as you do with your Mum. 

    I'm going to make the very most that I can of the next few months (if we have that long, I'm not taking anything for granted anymore) and try to make some amazing memories to carry with me. 

    Kindest regards, 

    Evie.